Tamara Hilliard learned in November 2017 that her husband, then 64, had amyotrophic lateral sclerosis (ALS), a fatal disease of the nervous system.
“I’ve been grieving since we got the diagnosis,” says Hilliard of Fort Worth, Texas. “For a long time, I’ve been sad, knowing that he was going to suffer, that he was going to die.”
Her husband, Jim, was an orthopedic surgeon and a former college football player for the University of Texas. His once hulking body soon began to deteriorate. He was able to walk through 2018, although he transitioned to a walker and eventually a motorized chair. “From Christmas 2019 on, he was completely dependent on me,” she says.
The progression was painful for Hilliard. Jim lost his ability to hold a fork, wash himself and, eventually, speak. “It’s so awful to watch someone you love lose something every day,” she says. “Every day was a loss.”
Social scientists describe an experience like Hilliard’s as anticipatory grief. It’s a grief process that involves not only dreading a loved one’s pending death, but also mourning the changes in daily life that occur as the person succumbs to illness.
In today’s modern world, multiple factors are combining to amplify occurrences of anticipatory grief. As life expectancies have increased and smoking-related deaths have diminished, degenerative illnesses associated with aging, such as dementia, are increasing. Public health experts expect higher incident rates for degenerative diseases like ALS, dementia, Parkinson’s and some types of cancers in the coming decades. For diseases like dementia, in which an average of four to eight years stretches between diagnosis and death, a loved one can endure many months of anticipatory grief.
Anticipatory grief is a relatively new psychological concept and was first considered in Western literature by Erich Lindemann in the 1940s. He studied the deadly nightclub fire at Boston’s Cocoanut Grove, which killed almost 500 people.
“It was one of the first empirical studies on grief,” says Ken Doka, senior vice president of grief programs for the Hospice Foundation of America. “He mentioned that you could grieve a death that not only happened but is occurring.”
However, Doka says, scholars in the 1970s were divided in their views about anticipatory grief. Some scholars believed that anticipatory grief lessened the emotions a person felt once their loved one actually passed. “It was a hydrostatic view of grief – you only have so much grief and the more tears you shed before the death, the less you shed after the death,” Doka says. “That was unproductive. There was no research to support that.”
Social scientists have since learned more about anticipatory grief and now hold that it’s not only about the pending death of a loved one. “It’s not just about expecting a death, it’s about all the losses you experience along the way,” Doka says.
Loss of Life
Terminal conditions such as ALS or dementia involve incremental changes that alter a patient and their life for years prior to death. For loved ones, these changes are losses to the life they once shared with the patient and the source of anticipatory grief.
One 2018 study of anticipatory grief found that people caring for spouses with late-stage dementia had higher anticipatory grief than caregivers of loved ones in the earlier stages because their daily life had been altered more extensively.
Spouses in the late-end stage also had higher anticipatory grief than other caregivers, such as adult children, who weren’t life partners coping with the loss of living daily life together.
Anxiety and depression is associated with anticipatory grief, and for some people, there can also be difficulty making medical decisions for their loved one. In another 2018 study of people serving as the medical surrogate for a loved one in the ICU, spouses had worsened decision making than the surrogates who were either adult children of the patients or the parent to the patient.
Such studies are prompting scholars to call for clear and supportive communication with medical surrogates in ICUs, as well as additional compassion for people whose loved ones are in palliative or hospice care.
For Hilliard, grief was a complex and fluid emotion that changed along with her husband’s condition.
The diagnosis was a shock, and she says it felt in the moment like a sudden death, even though he was still alive. “You’re bombarded and you can’t believe it,” she says. “It was like dying.”
She mourned throughout his illness as his body changed and their daily life was altered. Then, she felt a new type of grief during the last six weeks of his life when he was incapacitated and could no longer speak. During that time, she says she remembers she wanted him to pass peacefully so that his suffering would end.
Jim died in September 2021, and Hilliard was left without her husband of almost 34 years. His absence has been a time for her to reflect on their life together. “Now the grief trickles out. Now I feel I grieve the Jim before he was sick. I couldn’t in the moment when I was taking care him,” she says.
She remembers the man she says was brilliant and had a witty, sarcastic sense of humor. She mourns the husband who insisted on having the last word in their affectionate banter by always saying, “I love you more.”
“I miss him, I miss him every day,” she says.